HGC Consultative Panel
What is the Consultative Panel?
The Consultative Panel is made up of over 100 people with direct experience of living with genetic disorders, acts as a sounding board for our reports and recommendations, as well as giving us insight into their concerns about genetic issues.
Much of the Panel’s work is by correspondence, with Panel Members being sent short summaries of reports we are writing or issues we are discussing for comment. Annual meetings are also held to allow Panel Members to meet with Commissioners and to discuss issues in depth.
The Panel includes people who have experience of single gene, chromosomal or multifactorial disorders, and/or of childhood or adult onset disorders. Some people are affected themselves or are carriers and/or have experience as a parent of a child affected by a genetic disorder and/or caring for someone in their family who is affected. The Panel membership has a wide age range and includes people who live in England, Scotland, Wales and Northern Ireland.
Why was the Panel set up?
We wanted to hear from people directly affected by a genetic disorder so that they can help inform us when we make our decisions. We need to learn from people who know about the reality of living with a genetic disorder, their experience in deciding whether to take a genetic test and whether for example they have concerns about insurance and employment issues. Our hope is that the Panel will let us do this in a way that is very useful for the HGC while also being rewarding for those who participate.
We see the Panel as an important element of our public involvement strategy. We hope that the fact that the panel works primarily by correspondence allows people who cannot easily travel to meetings to join the Panel and means people can take part at times that suit them best and fit in with other commitments. We use the Panel to supplement our more traditional consultation via national organisations and patient groups.
How was the Panel set up?
In October 2001 we sent out a letter inviting people to join the Consultative Panel and set up a form on the HGC website that people could fill in. We had a very positive response to this initiative, with over 180 people interested in joining the Panel. These were divided into three main groups based on genetic disorder: single gene/Mendelian inheritance disorders, chromosomal disorders and multifactorial disorders; and were then grouped by type of personal experience: those affected, family member affected, carer or a combination of these. These groupings are fairly general but helped to identify people with similar experience and who we looked at in more detail. We used the other details such as age, geographic location, ethnic origin and the comments on the form to get as wide a range of members as possible.